Oh we had a funny appt today 😀
I had blood tests done about a week ago, so I can finally be put on the waiting list to see a neurologist in regards to my seizures. If they are epileptic seizures I can then be put on medication to try stop them; if they’re non-epileptic seizures at least I know they’re not fucking with my brain, and we can try find ways to manage them.
The GP today was a HUGE bitch. So much so it was funny!
The appt started with her asking if I could take my goggles off, to which I replied I could, but the polarized lenses help prevent seizures. Strike one against me, she didn’t know what polarized lenses were and obviously hated feeling less superior.
I began telling her about the seizures (telling her about my auras, symptoms during and after). I told her about CBD oil, and that we’ve identified several seizure triggers (she didn’t ask what they were or give me time to tell her them).
I showed her a recording of a seizure, and she responded with “Well what’s supposed to be going on here, because it looks like you’re just watching telly”.
OMG hahaha, what an idiot!! When I’ve just told you all the symptoms, and wow well done for showing you have no knowledge of seizures as anything other than tonic clonics / grand mals!!
This was the video btw
She spent ten minutes (meaning the appt ran over) talking about my MH. She kept trying to belittle or insult me, using my MH as a weapon, and got increasingly angry when I refused to be belittled or ashamed.
Some of the questions include
- When was I last on medication
- When was I last seen for my mental health
- Why aren’t I receiving help now
- What is my mental health like now
- Why do I think my MH is better now
- (weirdly) Did I go to a public school
- (after staring VERY pointedly at the scars on my arm) Do I have a history of self-harming? Why? For how long?
I was able to answer these questions extremely confidently, and this also annoyed her. Me and my partner joined as a team to explain the stress of appointments were extremely detrimental to my MH, and the fact they never helped anyway meant all they did was make me worse. I am doing better now, mentally, than I have in almost a decade.
She then asked me if I worked and when I last worked, and did not approve of the fact I hadn’t been able to work due to disability for so long.
After this she began talking about my seizures, but obviously referring to them as “episodes”. She began telling me that they may not be “true seizures”, and I interrupted to say we were very well aware about non-epileptic seizures, but obviously it’s worth seeing a neurologist because if I do have epilepsy, I can get treatment.
Everytime she spoke about epileptic and non-epileptic seizures, she referred to them as ‘true’ and ‘not true’ seizures. Well done for perpetuating the stigma against PNES!!
She said we might want to collect more video footage before the neurologist, and we said we had about a dozen videos spanning a year. She began to say we might want to record how many seizures I have a day, and we interrupted her to say we use a seizure tracking app to record how many I have, triggers, auras etc.
By the end of the appt she hated us, because I wouldn’t be embarrassed about my history of MH, and we were so knowledgeable about all my conditions. We (my partner and I) came out laughing, and feeling like a really solid team 🙂